So today is my birthday. I am happily turning 43 years old. Actually, I think I have never been so happy to have a birthday as I am about this one. Not that 43 is a milestone of any sort, but for me, I suppose it is.
One year ago today I was floating in a pool at a fantastically lovely beach house, spending the weekend with my Mommy friends, as we have done every year for...(not sure how many, but it is a long time!) These weekends are always filled with really great food and really great conversation, lots of cheese and chocolate and wine (all the major food groups) and at least one spectacular meal out or other event. We moms reconnect as adults, get to have conversations and actually finish a thought without being interrupted, sleep in the most amazingly decadent beds ever made, and laugh...a lot. My favorite thing to do is to float in the pool, stare up at the sky, and just listen to myself breathe. It's a sound I really only hear once a year, as there are no little voices drowning me out. We have had some amazing adventures, starting with the leopard spotted limousine, a chance meeting at a restaurant with Kevin Bacon and his lovely wife Kyra Sedgewick (who ran right into my pregnant belly), and, of course, seeing the one and only Prince in concert. We have celebrated the births of our children and mourned the deaths of our parents. It is our one chance to slow down and catch each other up on all the happenings of the past year. I treasure that weekend and always come home renewed and refreshed and maybe a few pounds heavier. (Did I mention the cheese and chocolate?)
One of the big realizations of these weekends is that we just never know what is coming around the next bend or the next flip of the calendar page. Turns out, the year we saw Prince, I was already pregnant with my third, I just didn't know it yet. (Of course, I wouldn't know for quite a while, but that is a story for another time.) Maybe that's why he likes music so much! And of course, last year when I was floating in the pool, listening to my breath, I had no idea that in a few short months my life would change so dramatically. My 42nd year, except for the first few months, has really been pretty crappy. I have had more days of feeling bad than feeling good and more tears than I can count. But of course, there were moments of happiness, of feeling not so bad. There were the lessons learned about the love in my world and how I didn't appreciate that it was there. I have learned to tell people what I am thinking and feeling, and I have learned about the power of prayer. All the months of not being able to speak taught me to be a better listener, especially to my children. My husband and I could not be any closer. Most of all, I have simply learned to be thankful.
We had a very quiet celebration today. I'm fighting an infection and I'm still not eating, so no special dinner or cake for me. Instead my family showered me with gifts and love. My brother came in from Baltimore specifically to be here for my birthday. My daughter proved that she has inherited my crafty gene with not one but two cards, complete with sparkles. My boys have given me more hugs and kisses than I can count. I am still trying to catch up with all the birthday wishes on Facebook (if I haven't gotten to you yet, thank you!) I am looking forward to being 43. Because I get to. And for that, I am most thankful.
Who knows what this year will bring. My one birthday wish is that this year brings me a clean bill of health, continued recovery, a return to teaching, and that I continue to treasure all that I have learned. Okay, so maybe that's four wishes, but who's counting?
Love and sparkles to you all,
Gayle
Sunday, August 9, 2015
Thursday, August 6, 2015
Looking back to look ahead
I was cleaning up the office/craftroom/spot-to-dump-anything-you-don't-know-where-it-goes room and accidentally ran across some pictures from when I was still in the hospital. I say accidentally, because while I certainly knew the pictures were around somewhere, I had conveniently forgotten where I had hidden them. (Unfortunately, that is happening with more and more frequency lately...every day is an adventure in discovering where I put things away!) These were the pictures that my sister-in-law graciously took of me to help the kids know what to expect when I came home. When I look at them, there is no question in my mind why the little ones were so afraid of me those first few days. The images are jarring. I truly was a terrifying sight to behold. All those scary, gory Halloween costumes that are starting to pop up in stores (really, it is August!), they've got nothing on me!
I have waffled about putting some of my initial pictures on this blog. Some days I think that everyone should see the pictures, if only as a cautionary tale. Other days, I think that no one should ever have to look at them. I have decided that I am not going to post them. I'm not worried about what other people would think of the pictures, except that I really don't want the pity. No, I'm not putting the pictures up because I simply don't want to see them regularly. I don't want to google myself ten years from now and have that be the image that pops up. I don't want to be haunted by the visual reminder of the hardest days of my life. So, I am putting the pictures away again, this time face down in a drawer I use frequently. That way I know they are there, but I don't have to look at them unless I really want to. Maybe someday I will be ready to move them, but for now, they need to stay where they are.
Some days I am frustrated that things are not moving faster with my recovery (pretty sure I have already established that patience is not my thing!) but this was really a wake up call for me. Those pictures were taken a mere eight months ago. They show me at my most vulnerable...tongue huge and distorted, black stitches running across it, sticking three inches outside my mouth and so swollen my jaw was opened so wide I could have been singing opera. My entire body was swollen from surgery, I had angry new scars and bruises, so many bruises, from iv's and blood draws, and I was obviously in pain. Looking at the pictures, I am remembering how I felt, angry and scared, isolated, even though my loved ones never left me alone, frustrated and sad. I was unable to communicate in any way except by typing notes out on my cell phone and that was a huge part of my isolation and frustration.
So I look back on those pictures now not with fear and anger, but with thanks and love. Sure, I'm not exactly where I want to be in my recovery. But I am sure as hell not lying in a hospital bed attached to tubes and monitors. My speech isn't as clear as I would like it to be, but I can speak! I can tell my children that I love them (or yell at them when they need that too!) and laugh and answer questions without having to have my cell phone in hand to type it out. My bruises have faded, my scars I wear proudly as badges of honor because damnit, I have earned them, my battle scars. I am living my life. It's a different life right now, one that moves a little slower and requires a lot more rest and care. But different is okay. I realize that things are never going to be the same. They can't be. I am irrevocably changed, inside and out. Forgive me the cliché, but I feel like I have spent the last eight months in a cocoon and I am just about ready to let the butterfly out.
I think the real difference between the me now and the me in those pictures is that I am hopeful. Eight months ago, I just wanted to get out of the hospital, to get home. I couldn't look much further that that in those first few days because it was just too scary. Not that things aren't scary now. Trust me, they are. But I am stronger now, making plans and goals, looking forward. I might not see all those plans to fruition, might not realize all my goals, but that's okay. The fun is in the trying. I will never forget those days in the hospital, the days before my surgery when it was all looming ahead of me, the day of my diagnosis when my world crumbled around me. But they aren't my every waking thought and breath. They are becoming a part of my history. And I am glad to leave my history in the past.
Somehow these posts always end up longer than I planned, and seem to meander away from where I start, but if you are still here and still reading, thank you. I have gotten a lot of great feedback about my posts, but now I have a favor to ask. There is not a lot out there written by oral cancer patients, yet everyone I know seems to know someone with head or neck cancer of some sort. Please share my blog with anyone you think might be interested (or even people who won't, who knows, they might like it!) I am looking forward to connecting with other cancer patients and survivors through this blog. Thanks mucho!
As always...
Love and sparkles to you all,
Gayle
I have waffled about putting some of my initial pictures on this blog. Some days I think that everyone should see the pictures, if only as a cautionary tale. Other days, I think that no one should ever have to look at them. I have decided that I am not going to post them. I'm not worried about what other people would think of the pictures, except that I really don't want the pity. No, I'm not putting the pictures up because I simply don't want to see them regularly. I don't want to google myself ten years from now and have that be the image that pops up. I don't want to be haunted by the visual reminder of the hardest days of my life. So, I am putting the pictures away again, this time face down in a drawer I use frequently. That way I know they are there, but I don't have to look at them unless I really want to. Maybe someday I will be ready to move them, but for now, they need to stay where they are.
Some days I am frustrated that things are not moving faster with my recovery (pretty sure I have already established that patience is not my thing!) but this was really a wake up call for me. Those pictures were taken a mere eight months ago. They show me at my most vulnerable...tongue huge and distorted, black stitches running across it, sticking three inches outside my mouth and so swollen my jaw was opened so wide I could have been singing opera. My entire body was swollen from surgery, I had angry new scars and bruises, so many bruises, from iv's and blood draws, and I was obviously in pain. Looking at the pictures, I am remembering how I felt, angry and scared, isolated, even though my loved ones never left me alone, frustrated and sad. I was unable to communicate in any way except by typing notes out on my cell phone and that was a huge part of my isolation and frustration.
So I look back on those pictures now not with fear and anger, but with thanks and love. Sure, I'm not exactly where I want to be in my recovery. But I am sure as hell not lying in a hospital bed attached to tubes and monitors. My speech isn't as clear as I would like it to be, but I can speak! I can tell my children that I love them (or yell at them when they need that too!) and laugh and answer questions without having to have my cell phone in hand to type it out. My bruises have faded, my scars I wear proudly as badges of honor because damnit, I have earned them, my battle scars. I am living my life. It's a different life right now, one that moves a little slower and requires a lot more rest and care. But different is okay. I realize that things are never going to be the same. They can't be. I am irrevocably changed, inside and out. Forgive me the cliché, but I feel like I have spent the last eight months in a cocoon and I am just about ready to let the butterfly out.
I think the real difference between the me now and the me in those pictures is that I am hopeful. Eight months ago, I just wanted to get out of the hospital, to get home. I couldn't look much further that that in those first few days because it was just too scary. Not that things aren't scary now. Trust me, they are. But I am stronger now, making plans and goals, looking forward. I might not see all those plans to fruition, might not realize all my goals, but that's okay. The fun is in the trying. I will never forget those days in the hospital, the days before my surgery when it was all looming ahead of me, the day of my diagnosis when my world crumbled around me. But they aren't my every waking thought and breath. They are becoming a part of my history. And I am glad to leave my history in the past.
Somehow these posts always end up longer than I planned, and seem to meander away from where I start, but if you are still here and still reading, thank you. I have gotten a lot of great feedback about my posts, but now I have a favor to ask. There is not a lot out there written by oral cancer patients, yet everyone I know seems to know someone with head or neck cancer of some sort. Please share my blog with anyone you think might be interested (or even people who won't, who knows, they might like it!) I am looking forward to connecting with other cancer patients and survivors through this blog. Thanks mucho!
As always...
Love and sparkles to you all,
Gayle
Friday, July 31, 2015
Cool kids and back to school
I had a high school moment the other day. Literally. I opened Facebook to find an invitation to my 25th high school reunion. (Honestly, where does the time go?) I looked at the date and realized that my doctor's appointment to remove my trach is two days after the reunion. So of course, my first reaction was nope, not going. I didn't want all the cool kids from high school, who I spent so much time wanting to be, to see me with a trach. It is so not cool.
For about 24 hours, that really bugged me. I really wanted to see my old friends (and by old, I don't mean age, I mean, these are the folks who got me through those horrible formative teenage years!) Everyone who matters to me knows what I have gone through this year. The trach is simply one of the more visible markers of my struggle. I can't let that keep me from seeing my friends, who, I am hoping, want to see me too, trach or no trach. Of course I want it gone, I want it gone more than anything I have ever wanted before. But I realized I don't want it gone because of what the cool kids might think. No, I want it gone so that I can talk without thinking about breathing and so that I don't have to spend major chunks of my day dealing with the cleaning and maintenance of it and so that I can hug someone without the trach being pushed uncomfortably into my neck. I want it gone so my little one can sit on my lap and rest his head on me. I want it gone so I can wear all the cute scarves I have been stockpiling. I want it gone so I can start to feel normal again. I want it gone so I can ride the rollercoasters when we take my daughter to the amusement park for her birthday. I want it gone so I can look in the mirror and not have to stare into it. There are so many, many reasons I want the trach gone, the least important of which involves the cool kids from high school. So, I changed my RSVP. I will be at that reunion, trach or no trach,
In other news, you may have noticed that summer is beginning to wind down and we are thinking about back to school prep. (Before I go any further, do you remember the way back years when summer didn't begin winding down until the end of August? It is July 30th...that should be smack dab in the middle of summer.) I am having a bit of an identity crisis looking at the calendar. This year will mark my 18th year in the classroom, all at one school site. For only the second time in my career, I will not be opening my classroom. The only other time I have missed the beginning of school is when my middle child was born just a few days before school started in 2008. But here I am, not doing anything to get ready for my new class. of kiddos. I have no school projects going, I haven't spent any money on classroom supplies (I know one husband who is quite thrilled with that!), I haven't even made any lists. Who am I????
The blessing of this identity crisis, the really, truly sparkly part is that for the first time since my children were born, I get to play Mommy on the first day of school. I have never taken my kids to school the first day and I have never been able to volunteer in their classrooms. I usually have to wait until Back to School night to introduce myself to their teachers and explain why I won't be around much during the year.
The not so fabulous side of this, the spitball side, is that I have no control over what will happen in my classroom this year. (We all know what a control freak I can be about certain things, but I am not unique in this. Ask any teacher if they have control issues, I can guarantee that 99% will say yes and the other 1% is deluded or lying.) Someone else will set up the room to their specifications and put up bulletin boards of their choosing. Someone else will welcome my students and wipe away their tears the first day and get love notes from them. Someone else will teach them their procedures for lining up and moving around the room. Someone else will teach them. When I go back to work in February, I will be the substitute teacher.
I met up with part of my school family this morning and someone made the comment that I must be relieved not to be going back in a few weeks. I know that when I am in the thick of the school year and I have a million and one things going on, I wish hard for some downtime. But the truth of the matter is, deep down in my core, I miss teaching more than I ever thought possible. It is not just a job I am missing, it is a part of who I am. A part my kids wish I would turn off once in a while, but still, a big part of me. A few times during the last nine months I have been asked the question, "What will you do if you can't go back to teaching?" I have yet to come up with a suitable answer because I honestly don't know. Hopefully, I never have to find out.
Okay, I think that is enough musing for today. Go out and enjoy the rest of your summer...or stay in and enjoy your air-conditioning!
Love and sparkles,
Gayle
For about 24 hours, that really bugged me. I really wanted to see my old friends (and by old, I don't mean age, I mean, these are the folks who got me through those horrible formative teenage years!) Everyone who matters to me knows what I have gone through this year. The trach is simply one of the more visible markers of my struggle. I can't let that keep me from seeing my friends, who, I am hoping, want to see me too, trach or no trach. Of course I want it gone, I want it gone more than anything I have ever wanted before. But I realized I don't want it gone because of what the cool kids might think. No, I want it gone so that I can talk without thinking about breathing and so that I don't have to spend major chunks of my day dealing with the cleaning and maintenance of it and so that I can hug someone without the trach being pushed uncomfortably into my neck. I want it gone so my little one can sit on my lap and rest his head on me. I want it gone so I can wear all the cute scarves I have been stockpiling. I want it gone so I can start to feel normal again. I want it gone so I can ride the rollercoasters when we take my daughter to the amusement park for her birthday. I want it gone so I can look in the mirror and not have to stare into it. There are so many, many reasons I want the trach gone, the least important of which involves the cool kids from high school. So, I changed my RSVP. I will be at that reunion, trach or no trach,
In other news, you may have noticed that summer is beginning to wind down and we are thinking about back to school prep. (Before I go any further, do you remember the way back years when summer didn't begin winding down until the end of August? It is July 30th...that should be smack dab in the middle of summer.) I am having a bit of an identity crisis looking at the calendar. This year will mark my 18th year in the classroom, all at one school site. For only the second time in my career, I will not be opening my classroom. The only other time I have missed the beginning of school is when my middle child was born just a few days before school started in 2008. But here I am, not doing anything to get ready for my new class. of kiddos. I have no school projects going, I haven't spent any money on classroom supplies (I know one husband who is quite thrilled with that!), I haven't even made any lists. Who am I????
The blessing of this identity crisis, the really, truly sparkly part is that for the first time since my children were born, I get to play Mommy on the first day of school. I have never taken my kids to school the first day and I have never been able to volunteer in their classrooms. I usually have to wait until Back to School night to introduce myself to their teachers and explain why I won't be around much during the year.
The not so fabulous side of this, the spitball side, is that I have no control over what will happen in my classroom this year. (We all know what a control freak I can be about certain things, but I am not unique in this. Ask any teacher if they have control issues, I can guarantee that 99% will say yes and the other 1% is deluded or lying.) Someone else will set up the room to their specifications and put up bulletin boards of their choosing. Someone else will welcome my students and wipe away their tears the first day and get love notes from them. Someone else will teach them their procedures for lining up and moving around the room. Someone else will teach them. When I go back to work in February, I will be the substitute teacher.
I met up with part of my school family this morning and someone made the comment that I must be relieved not to be going back in a few weeks. I know that when I am in the thick of the school year and I have a million and one things going on, I wish hard for some downtime. But the truth of the matter is, deep down in my core, I miss teaching more than I ever thought possible. It is not just a job I am missing, it is a part of who I am. A part my kids wish I would turn off once in a while, but still, a big part of me. A few times during the last nine months I have been asked the question, "What will you do if you can't go back to teaching?" I have yet to come up with a suitable answer because I honestly don't know. Hopefully, I never have to find out.
Okay, I think that is enough musing for today. Go out and enjoy the rest of your summer...or stay in and enjoy your air-conditioning!
Love and sparkles,
Gayle
Monday, July 13, 2015
Random Thoughts
This is a list, in no particular order, of some random thoughts I've had since I was diagnosed. Remember that this is just my experience, in no way, shape, or form do I speak for all cancer patients.
1. Cancer sucks. Literally, it sucks the life right out of you. Duh.
2. Some people suck. Not many, just a few. Most people are awesome, caring and compassionate. Every once in a while though, I run across someone, be it a "friend", a nurse, a tech, another patient, who just sucks. I'm glad to report that I have effectively eliminated most of those people from my life. I can't do anything about folks out in the world, but when it comes to my circle, I don't have to let the sucky people in anymore.
3. Cancer has freed me. I have always, always been very cautious by nature. I don't take risks, I don't put myself in situations where there could be danger, either to my body or my psyche. Not anymore. Not that I am going to go out and scale a rockface or jump out of an airplane, but I am looking forward to taking a few risks, putting myself out there. This blog has been the first step. I've always wanted to write but I never wanted to put myself out there to be open to criticism. But if not me, who will document this? I have no idea what it will lead to, but it is getting me out of my comfort zone.
4. I don't care what people think. This sort of started with me when I hit my 40's. I realized that I had spent far too long worrying about other people and not worrying enough about what I thought about me. Since my diagnosis and subsequent surgeries and treatments, I REALLY don't care what people think. Of course, my friends and family are important and I value their opinions, but really, the only opinion that really matters is my own. I have to be true to me, to my values and core ideals. I might need to figure out what those values and ideals are now, as I really think they have probably shifted in the last year, but that is part of the process.
5. Everybody has a story. And...every body has a story. I know that I have often been quick to judge people based on their appearances, I think we all do it, especially about people who stand out from the crowd, people who are different. I was always one of those blenders, never really stood out from the crowd too much. The only thing different about me was my height, or lack of it. But now, my body has a different story. I have scars, very visible scars. For now, I have a trach. (Let's keep our fingers crossed that this goes away soon!) My speech can be hard to understand at times and I have to keep a towel with me to spit into every few minutes. So yeah, now I don't blend, I stand out. And I have quite a story to tell. I am so appreciative now of the people who ask, instead of giving me the side-eye or quickly looking away if they accidentally make eye contact with me. One of my favorite moments happened at Trader Joe's a few weeks after my second surgery, when I had finally made it back into the world. The checker started emptying my cart without really looking at me, and when she finally looked up, she broke into a big grin. "My nephew has a trach," she said. "Do you hate it as much as he does?" That's it. Ice breaker. She wanted to know my story.
6. I hate when people tell me I am brave. Or that they don't know how I am getting through it. I know they are saying this out of love and I'm sure that I have said this to people in the past. The truth is, I'm not brave. I'm scared shitless and I have been since the moment I found out I needed a biopsy. Do I put on a brave face? Yes. I have to, I have three kids. Not that I'm not honest with them. I've told them, in varying degrees dependent on their ages, that I'm scared. And that it is okay to be scared when scary things happen. But will it help them to find me sobbing on the bathroom floor? Nope. So I don't do it. I save my tears for the shower and sappy commercials. And about getting through it? Honestly people, do I have another choice? No one has given me the option of walking away from this, so from my perspective, the only thing I CAN do is to get through it. Sometimes it is minute by minute, hour by hour. Sometimes it is a day at a time. The way I see it, the only other choice is to give up...which would not have spectacularly good results.
7. Side effects should be presented like a menu and you should get to pick and choose. I know, total fantasy, but a girl can dream! I would have given up my hair in an instant to not deal with my icky sticky glue issue. Instead, I got big glue issues with just a little hair loss thrown in for good measure.
Okay, I guess that's it for today's random thoughts. I'm sure there are more percolating somewhere down deep and when they bubble to the surface, I will undoubtedly share them.
Love and sparkles,
Gayle
1. Cancer sucks. Literally, it sucks the life right out of you. Duh.
2. Some people suck. Not many, just a few. Most people are awesome, caring and compassionate. Every once in a while though, I run across someone, be it a "friend", a nurse, a tech, another patient, who just sucks. I'm glad to report that I have effectively eliminated most of those people from my life. I can't do anything about folks out in the world, but when it comes to my circle, I don't have to let the sucky people in anymore.
3. Cancer has freed me. I have always, always been very cautious by nature. I don't take risks, I don't put myself in situations where there could be danger, either to my body or my psyche. Not anymore. Not that I am going to go out and scale a rockface or jump out of an airplane, but I am looking forward to taking a few risks, putting myself out there. This blog has been the first step. I've always wanted to write but I never wanted to put myself out there to be open to criticism. But if not me, who will document this? I have no idea what it will lead to, but it is getting me out of my comfort zone.
4. I don't care what people think. This sort of started with me when I hit my 40's. I realized that I had spent far too long worrying about other people and not worrying enough about what I thought about me. Since my diagnosis and subsequent surgeries and treatments, I REALLY don't care what people think. Of course, my friends and family are important and I value their opinions, but really, the only opinion that really matters is my own. I have to be true to me, to my values and core ideals. I might need to figure out what those values and ideals are now, as I really think they have probably shifted in the last year, but that is part of the process.
5. Everybody has a story. And...every body has a story. I know that I have often been quick to judge people based on their appearances, I think we all do it, especially about people who stand out from the crowd, people who are different. I was always one of those blenders, never really stood out from the crowd too much. The only thing different about me was my height, or lack of it. But now, my body has a different story. I have scars, very visible scars. For now, I have a trach. (Let's keep our fingers crossed that this goes away soon!) My speech can be hard to understand at times and I have to keep a towel with me to spit into every few minutes. So yeah, now I don't blend, I stand out. And I have quite a story to tell. I am so appreciative now of the people who ask, instead of giving me the side-eye or quickly looking away if they accidentally make eye contact with me. One of my favorite moments happened at Trader Joe's a few weeks after my second surgery, when I had finally made it back into the world. The checker started emptying my cart without really looking at me, and when she finally looked up, she broke into a big grin. "My nephew has a trach," she said. "Do you hate it as much as he does?" That's it. Ice breaker. She wanted to know my story.
6. I hate when people tell me I am brave. Or that they don't know how I am getting through it. I know they are saying this out of love and I'm sure that I have said this to people in the past. The truth is, I'm not brave. I'm scared shitless and I have been since the moment I found out I needed a biopsy. Do I put on a brave face? Yes. I have to, I have three kids. Not that I'm not honest with them. I've told them, in varying degrees dependent on their ages, that I'm scared. And that it is okay to be scared when scary things happen. But will it help them to find me sobbing on the bathroom floor? Nope. So I don't do it. I save my tears for the shower and sappy commercials. And about getting through it? Honestly people, do I have another choice? No one has given me the option of walking away from this, so from my perspective, the only thing I CAN do is to get through it. Sometimes it is minute by minute, hour by hour. Sometimes it is a day at a time. The way I see it, the only other choice is to give up...which would not have spectacularly good results.
7. Side effects should be presented like a menu and you should get to pick and choose. I know, total fantasy, but a girl can dream! I would have given up my hair in an instant to not deal with my icky sticky glue issue. Instead, I got big glue issues with just a little hair loss thrown in for good measure.
Okay, I guess that's it for today's random thoughts. I'm sure there are more percolating somewhere down deep and when they bubble to the surface, I will undoubtedly share them.
Love and sparkles,
Gayle
Thursday, July 9, 2015
It Takes A Village
Written Tuesday, July 7
I know I've talked about this before, but today I really need to articulate these feelings. The saying "It takes a village to raise a child" is being revised in my house. We now say, "It takes a village to care for a cancer patient." I am so incredibly blessed to have an amazing village, one that I really didn't know existed before I got sick. I knew that there were good people in my life, and I knew that if something bad ever happened, that there was a handful of people that I could count on to help out. What I didn't know, never really expected, and have been overjoyed to learn, is that my handful of people is so, so much bigger than a handful!
As I sit here writing this, it is the first night of dress rehearsal for the girl's dance recital this weekend. For those of you non-dance moms out there, this entails three very long afternoon/evenings during which we can take pictures and videos (no pics or videos at the actual recital). It is exhausting, but also really fun to watch. This is the first time since her first recital in 2006 that I am not in the theater. Why am I telling you all of this? Because within an hour of rehearsal starting, I had ten pictures either texted or sent to me via Facebook. I know there are more coming. My village of dance mamas is determined not to let me miss out on a moment, and for that, I am so, so thankful. These are the same moms who have coordinated a schedule to make sure that the girl has not missed a class or an extra rehearsal or any sort of dance related event, many of them going out of their way after a long night of class to bring her home. And the same moms who were the first to volunteer to drive me to radiation. And the same moms who brought food, lots and lots of food, to feed my family while I was in the hospital. They have sewn costumes, done hair and makeup, cheered her on in my place, all the while making sure I had pictures and documentation of all of her accomplishments.
What is remarkable about this part of my village is that many of these women are not people I knew very well before I got sick. Sure, we have been couch surfing for years, trading stories and laughs and complaints about our children, but we didn't really know each other. Except for a few, we didn't socialize outside the studio, except maybe at a birthday party. But not one of them hesitated. Not only did they not hesitate, they didn't wait to be asked to help out. In fact, some of them wouldn't take no for an answer (you know who you are!) I am, and always will be, eternally grateful.
Another part of my village is the neighborhood of old friends, people who have know me since the way back, who know all the stories. These are the folks who have kept my spirits up, who don't mind (or at least say they don't mind) when I text them at midnight from the hospital because I am losing my mind or who send me a text or an email or a shout out from Facebookland every single day. They are the friends whose psychic messages I get loud and clear, the cheerleaders of unwavering faith. And they are the friends who let me be angry and rail against the world, the universe, G-d, wherever this dreaded disease originated and they don't judge. They rail with me, are angry with me, and when I don't have the energy, they are angry for me. And then, they help me to let go of the anger so I can heal. I don't have to question whether they will be here because I know they are always at my back. Again, eternally grateful.
Far and away the most constant and enduring part of my village are my family members. My mother-in-law and sister-in-law took turns coming in from Virginia to hold down the fort at home while Steve and my mom took care of me at the hospital. Our schedule is not for the faint of heart, but they managed, with the help of other village members, to keep everyone on track and occupied. My mother spent hours and hours and hours at the hospital and then generously gave up half her room so that I could come home. For months she shared her space with me and my oh-so-stylish and comfy hospital bed and medical equipment. As a mother, I know how much it must pain her to see me miserable. My brother, poor guy, moved cross country (at my insistence), the day after my first surgery, to start a new job. I know he has hated every minute of being away, but I can feel the love and support from him from all the way from Maryland. He has kept me on my toes, listened while I complained, and made me laugh, all the while making sure I am keeping it real. No hiding anything from him.
Of course, the most important members of my village are my husband and those three little bodies (okay, two little bodies and one who has suddenly shot up inches above me). I am going to save them for my next post...It Takes a Village, Part 2, since this post has gotten awfully long.
Love and sparkles to you all,
Gayle
I know I've talked about this before, but today I really need to articulate these feelings. The saying "It takes a village to raise a child" is being revised in my house. We now say, "It takes a village to care for a cancer patient." I am so incredibly blessed to have an amazing village, one that I really didn't know existed before I got sick. I knew that there were good people in my life, and I knew that if something bad ever happened, that there was a handful of people that I could count on to help out. What I didn't know, never really expected, and have been overjoyed to learn, is that my handful of people is so, so much bigger than a handful!
As I sit here writing this, it is the first night of dress rehearsal for the girl's dance recital this weekend. For those of you non-dance moms out there, this entails three very long afternoon/evenings during which we can take pictures and videos (no pics or videos at the actual recital). It is exhausting, but also really fun to watch. This is the first time since her first recital in 2006 that I am not in the theater. Why am I telling you all of this? Because within an hour of rehearsal starting, I had ten pictures either texted or sent to me via Facebook. I know there are more coming. My village of dance mamas is determined not to let me miss out on a moment, and for that, I am so, so thankful. These are the same moms who have coordinated a schedule to make sure that the girl has not missed a class or an extra rehearsal or any sort of dance related event, many of them going out of their way after a long night of class to bring her home. And the same moms who were the first to volunteer to drive me to radiation. And the same moms who brought food, lots and lots of food, to feed my family while I was in the hospital. They have sewn costumes, done hair and makeup, cheered her on in my place, all the while making sure I had pictures and documentation of all of her accomplishments.
What is remarkable about this part of my village is that many of these women are not people I knew very well before I got sick. Sure, we have been couch surfing for years, trading stories and laughs and complaints about our children, but we didn't really know each other. Except for a few, we didn't socialize outside the studio, except maybe at a birthday party. But not one of them hesitated. Not only did they not hesitate, they didn't wait to be asked to help out. In fact, some of them wouldn't take no for an answer (you know who you are!) I am, and always will be, eternally grateful.
Another part of my village is the neighborhood of old friends, people who have know me since the way back, who know all the stories. These are the folks who have kept my spirits up, who don't mind (or at least say they don't mind) when I text them at midnight from the hospital because I am losing my mind or who send me a text or an email or a shout out from Facebookland every single day. They are the friends whose psychic messages I get loud and clear, the cheerleaders of unwavering faith. And they are the friends who let me be angry and rail against the world, the universe, G-d, wherever this dreaded disease originated and they don't judge. They rail with me, are angry with me, and when I don't have the energy, they are angry for me. And then, they help me to let go of the anger so I can heal. I don't have to question whether they will be here because I know they are always at my back. Again, eternally grateful.
Far and away the most constant and enduring part of my village are my family members. My mother-in-law and sister-in-law took turns coming in from Virginia to hold down the fort at home while Steve and my mom took care of me at the hospital. Our schedule is not for the faint of heart, but they managed, with the help of other village members, to keep everyone on track and occupied. My mother spent hours and hours and hours at the hospital and then generously gave up half her room so that I could come home. For months she shared her space with me and my oh-so-stylish and comfy hospital bed and medical equipment. As a mother, I know how much it must pain her to see me miserable. My brother, poor guy, moved cross country (at my insistence), the day after my first surgery, to start a new job. I know he has hated every minute of being away, but I can feel the love and support from him from all the way from Maryland. He has kept me on my toes, listened while I complained, and made me laugh, all the while making sure I am keeping it real. No hiding anything from him.
Of course, the most important members of my village are my husband and those three little bodies (okay, two little bodies and one who has suddenly shot up inches above me). I am going to save them for my next post...It Takes a Village, Part 2, since this post has gotten awfully long.
Love and sparkles to you all,
Gayle
Saturday, June 27, 2015
The Good, The Bad, and The Ugly
One month. It has been one entire month since I last had the energy and brain power to even attempt a blog post. In my defense, I had a good reason for going radio silent. That damn machine. It took everything out of me and I am only just now starting to get small parts of me back.
In my last post I started detailing some of the side effects of the radiation treatment. I look back on that post with fondness. I really had no idea how much worse it was going to get. I have learned not to assume that I have hit rock bottom, because every time I think to myself, "Self, I think this is the worst we could possibly feel" I am proven wrong. I could always feel worse.
As my weeks of radiation progressed, I went from mildly annoyed by side effects to laying on the bathroom floor praying to G-d that things would get better soon. The superradiated saliva I talked about earlier...that was nothing. Each day, things got progressively worse. It felt as if I had a fountain of white glue in my mouth, thick and sticky and everywhere. Up my nose, down my throat, into my trach. I was choking on glue and the only thing I could do was spit. A lot. If I was lucky, that worked for a few minutes. Most of the time, not so much. I will spare you all the gory details, but whatever you are imagining, so, so much worse. My sunburn got worse too. We are talking lobster red from about the middle of my nose to the middle of my chest. There are no pictures. There will never be pictures. And with the sunburn came the most horrific blisters, oozy and painful, as if all the nerve endings in my neck had suddenly come to the surface to be poked and pinched. The only side effect that didn't get worse were the mouth sores. Thank goodness for small favors. The sores in my mouth seemed to respond quickly to the "magic mouthwash" I was prescribed.
June 18th saw my last day of radiation. I got a certificate and everything! But it was not the end of my ordeal, not by a long shot. Every day post radiation, things kept moving downhill. I was warned about this. Nobody ever gives you a precise answer, I know, everyone is different, but I have been told that the side effects will last anywhere from two to six weeks post radiation. During that time, I am still "cooking" and can expect to continue to feel all the side effects.
I am now eight days into my post radiation life. I have only left my bedroom a handful of times in the last eight days. Except for the time I spend in the bathroom, I am propped up in bed, not moving, not talking, sometimes not doing anything but breathing. The first six of those eight days were brutal. Everyday was a little harder, a little more frustrating. I couldn't even cry about it because crying just created more sticky glue. But in the last couple of days, I have begun to see the smallest little pinprick of a glimmer of light. I had two nights of relatively good sleep (relatively being I only got up to deal with my glue issue three or four times instead of every 20-30 minutes) and that has made a huge difference. I finally seem to be in a good space with my feedings. For a while I was getting very few calories, as I was unable to do feedings regularly and when I did, there was no guarantee that I would keep anything down. I am still not getting the number of calories prescribed but I am working up to it. The blisters on my neck are healing well, thanks to the diligent care my hubs has provided. More on his amazingness in a later post...there is a lot to say on that subject. The redness in my face has progressed from lobster red to a deep freckled pink. I have enough energy to lift my head off the pillow and get my thoughts down on the page here, but I know a nap is coming as soon as I am done.
So, the good (not much, but a little), the bad (lots of that), and the ugly of my last month. Here's hoping that the good increases, the bad decreases, and the ugly just fades away.
Love and sparkles to you all,
Gayle
In my last post I started detailing some of the side effects of the radiation treatment. I look back on that post with fondness. I really had no idea how much worse it was going to get. I have learned not to assume that I have hit rock bottom, because every time I think to myself, "Self, I think this is the worst we could possibly feel" I am proven wrong. I could always feel worse.
As my weeks of radiation progressed, I went from mildly annoyed by side effects to laying on the bathroom floor praying to G-d that things would get better soon. The superradiated saliva I talked about earlier...that was nothing. Each day, things got progressively worse. It felt as if I had a fountain of white glue in my mouth, thick and sticky and everywhere. Up my nose, down my throat, into my trach. I was choking on glue and the only thing I could do was spit. A lot. If I was lucky, that worked for a few minutes. Most of the time, not so much. I will spare you all the gory details, but whatever you are imagining, so, so much worse. My sunburn got worse too. We are talking lobster red from about the middle of my nose to the middle of my chest. There are no pictures. There will never be pictures. And with the sunburn came the most horrific blisters, oozy and painful, as if all the nerve endings in my neck had suddenly come to the surface to be poked and pinched. The only side effect that didn't get worse were the mouth sores. Thank goodness for small favors. The sores in my mouth seemed to respond quickly to the "magic mouthwash" I was prescribed.
June 18th saw my last day of radiation. I got a certificate and everything! But it was not the end of my ordeal, not by a long shot. Every day post radiation, things kept moving downhill. I was warned about this. Nobody ever gives you a precise answer, I know, everyone is different, but I have been told that the side effects will last anywhere from two to six weeks post radiation. During that time, I am still "cooking" and can expect to continue to feel all the side effects.
I am now eight days into my post radiation life. I have only left my bedroom a handful of times in the last eight days. Except for the time I spend in the bathroom, I am propped up in bed, not moving, not talking, sometimes not doing anything but breathing. The first six of those eight days were brutal. Everyday was a little harder, a little more frustrating. I couldn't even cry about it because crying just created more sticky glue. But in the last couple of days, I have begun to see the smallest little pinprick of a glimmer of light. I had two nights of relatively good sleep (relatively being I only got up to deal with my glue issue three or four times instead of every 20-30 minutes) and that has made a huge difference. I finally seem to be in a good space with my feedings. For a while I was getting very few calories, as I was unable to do feedings regularly and when I did, there was no guarantee that I would keep anything down. I am still not getting the number of calories prescribed but I am working up to it. The blisters on my neck are healing well, thanks to the diligent care my hubs has provided. More on his amazingness in a later post...there is a lot to say on that subject. The redness in my face has progressed from lobster red to a deep freckled pink. I have enough energy to lift my head off the pillow and get my thoughts down on the page here, but I know a nap is coming as soon as I am done.
So, the good (not much, but a little), the bad (lots of that), and the ugly of my last month. Here's hoping that the good increases, the bad decreases, and the ugly just fades away.
Love and sparkles to you all,
Gayle
Sunday, May 24, 2015
Radiation....the gift that keeps on giving
I have been putting off writing this post because I wasn't really sure what I was going to say. The last week has been pretty awful and I wasn't sure I wanted to write about all the gory details, but I promised myself I was going to be honest and open about all of this. So, no sugarcoating. This is the real deal, folks. Cancer, in all its glory.
I am now 12 days into my radiation treatments. You know that old saying about the treatment being worse than the disease? Except for the fact that this disease would kill me if left untreated, it is absolutely true. The cancer itself was a minor inconvenience, not much more than a canker sore. The treatment is so, so much more than that.
I wrote last time about fatigue and losing my sense of taste. The loss of my taste buds was almost more of a mental side effect than a physical one. And the fatigue, while draining, wasn't a deal breaker. After almost six years of dealing with rheumatoid arthritis and its side effects, I have an arsenal of tricks to keep myself going. Those strategies seemed to be working for me pretty well, so I got a little overconfident. I can do this...no problem. Ha ha, said the radiation, I'll show you. (Yes, in my head, the radiation machine and I have conversations. Don't judge.) Oh boy, is he showing me. One of the effects of head and neck radiation is that it works to destroy your salivary glands. I thought that meant that I would have a dry mouth. Eventually, that may be the case. In the meantime, I have just the opposite. I have a mouth full of saliva. It's almost like I took a big sip of water but forgot to swallow and am just constantly walking around with a full mouth. And this isn't just any plain old, run of the mill, spit. No, it is supercharged radiated saliva. It is sticky and thick, and makes me gag when I do try to swallow it. I now spend my mornings (and a good part of the rest of the day) spitting into the sink, praying desperately not to get sick. I have spent so much time in the bathroom, I keep having flashbacks to my first two pregnancies, when morning sickness was so not my friend. Trying to talk with a mouth full of goo is daunting. I am either drooling or spitting or choking, but can't seem to get the words out. As a result, I am quieter than normal (of course, not everyone thinks that is a bad thing!) Just like the food, I feel like I had good things dangled in front of me for a few months and then yanked just out of reach.
As if that wasn't bad enough, I have developed sores all around the inside of my mouth and on my tongue, as well as a wretched sore throat. The sores ache and burn like my mouth is on fire, necessitating almost constant use of pain pills. With the pain pills comes the loss of my freedom. Not that I really feel like going anywhere, but I can't drive while I am medicated.
And as if that wasn't bad enough, I am beginning to get the "radiation sunburn" that I have been warned about. Now to be honest, I am so fair and pink that I look sunburned 90 percent of the time anyway. The skin on my face and my neck is getting red and itchy, especially around the scar where my lymph nodes were removed. The only thing I am allowed to use on my skin is aloe vera gel, which seems to offer some relief on my face. Treating my neck is complicated by the fact that I still have my trach, which means I still have my trach collar. (This is the same collar that the six year old is convinced is holding my head on to my body...he was in the room the other day when Steve was changing the collar and said "Mommy, hold on tight, I don't want your head to fall off!")
And again, as if that wasn't enough, I have begun to lose my hair. They say I will only lose the hair in back, but I'm not sure exactly what that means. Even though I knew it was coming, it was surprising to run my fingers through my hair and come away with clumps. Of course, my hair being so thick, you really can't tell yet. Honestly, in the grand scheme of things, I could really care less about this one. It doesn't hurt so it doesn't bother me. Eventually it will grow back and that won't hurt either. I like things that don't hurt.
I have tried to explain to the kids that I am getting medicine from a machine, which of course that middle child of mine thought was the coolest thing he had ever heard. (Those of you who know him well will appreciate that, those that don't should know that this is a child obsessed with machines of all kinds) I took pictures of the machine to share with them and thought that I would share them here too. I know that before I started this, I had no idea what a radiation machine looked like. Not that I think I ever really thought about it, I had no reason to!
I am now 12 days into my radiation treatments. You know that old saying about the treatment being worse than the disease? Except for the fact that this disease would kill me if left untreated, it is absolutely true. The cancer itself was a minor inconvenience, not much more than a canker sore. The treatment is so, so much more than that.
I wrote last time about fatigue and losing my sense of taste. The loss of my taste buds was almost more of a mental side effect than a physical one. And the fatigue, while draining, wasn't a deal breaker. After almost six years of dealing with rheumatoid arthritis and its side effects, I have an arsenal of tricks to keep myself going. Those strategies seemed to be working for me pretty well, so I got a little overconfident. I can do this...no problem. Ha ha, said the radiation, I'll show you. (Yes, in my head, the radiation machine and I have conversations. Don't judge.) Oh boy, is he showing me. One of the effects of head and neck radiation is that it works to destroy your salivary glands. I thought that meant that I would have a dry mouth. Eventually, that may be the case. In the meantime, I have just the opposite. I have a mouth full of saliva. It's almost like I took a big sip of water but forgot to swallow and am just constantly walking around with a full mouth. And this isn't just any plain old, run of the mill, spit. No, it is supercharged radiated saliva. It is sticky and thick, and makes me gag when I do try to swallow it. I now spend my mornings (and a good part of the rest of the day) spitting into the sink, praying desperately not to get sick. I have spent so much time in the bathroom, I keep having flashbacks to my first two pregnancies, when morning sickness was so not my friend. Trying to talk with a mouth full of goo is daunting. I am either drooling or spitting or choking, but can't seem to get the words out. As a result, I am quieter than normal (of course, not everyone thinks that is a bad thing!) Just like the food, I feel like I had good things dangled in front of me for a few months and then yanked just out of reach.
As if that wasn't bad enough, I have developed sores all around the inside of my mouth and on my tongue, as well as a wretched sore throat. The sores ache and burn like my mouth is on fire, necessitating almost constant use of pain pills. With the pain pills comes the loss of my freedom. Not that I really feel like going anywhere, but I can't drive while I am medicated.
And as if that wasn't bad enough, I am beginning to get the "radiation sunburn" that I have been warned about. Now to be honest, I am so fair and pink that I look sunburned 90 percent of the time anyway. The skin on my face and my neck is getting red and itchy, especially around the scar where my lymph nodes were removed. The only thing I am allowed to use on my skin is aloe vera gel, which seems to offer some relief on my face. Treating my neck is complicated by the fact that I still have my trach, which means I still have my trach collar. (This is the same collar that the six year old is convinced is holding my head on to my body...he was in the room the other day when Steve was changing the collar and said "Mommy, hold on tight, I don't want your head to fall off!")
And again, as if that wasn't enough, I have begun to lose my hair. They say I will only lose the hair in back, but I'm not sure exactly what that means. Even though I knew it was coming, it was surprising to run my fingers through my hair and come away with clumps. Of course, my hair being so thick, you really can't tell yet. Honestly, in the grand scheme of things, I could really care less about this one. It doesn't hurt so it doesn't bother me. Eventually it will grow back and that won't hurt either. I like things that don't hurt.
I have tried to explain to the kids that I am getting medicine from a machine, which of course that middle child of mine thought was the coolest thing he had ever heard. (Those of you who know him well will appreciate that, those that don't should know that this is a child obsessed with machines of all kinds) I took pictures of the machine to share with them and thought that I would share them here too. I know that before I started this, I had no idea what a radiation machine looked like. Not that I think I ever really thought about it, I had no reason to!
 |
| I lay on the table, mask attached, and they roll the table under the giant machine. It looks very high, but they raise the table so that the machine and I are staring each other in the face. |
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| Once I am in position, the machine rotates around me, shooting laser beams of radiation, for about 15 minutes. It is actually quite fascinating, especially when you aren't laying on the table. |
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